Further app after treatment finished - is this normal?

[Guest user]

Hi Elsk

thank you for letting me know about the holiday accruel during sick leave at least I am forarmed now in case anything is said. I still have about 4 weeks holiday and can't see me being able to take it all before the next holiday year starts (ours runs from 1st Sept - 31st Aug) so may have to carry some forward.

I will also ask my gp to put down suggested hours as at least that way I won't feel so guilty about leaving early or starting later for the first couple of weeks. That was one of my biggest concerns that I would just not cope with the hours straight away buut wouldn't feel able to just up and go!

Just going to make the most of my last week and hopefully enjoy the sunshine.

Have a good weekend ladies.

phillippa x

[cherub]

Topsymo, I was stage 3, I lymph node involved out of 22 and Her2 positive. When I asked what low to moderate meant the oncologists told me anything up to a 40% chance of a return within 5 years. The reason they told me they were not really expecting that to happen was on account of how everything responded to the treatment, esp the Herceptin. One of the first things I was told by them was that they felt my prognosis was good.

However, that doesn't mean I've taken my eye off the ball so to speak. I had an aunt who survived over 30 years post mastectomy - most of her lymph nodes were involved and they were just trialling the first drug developed. Sometimes I just think it's the luck of the draw and the hand you are dealt.

[Guest user]

Hi Wendy great news you must feel so relieved.

Yes Wendy he is so sweet his name is Tiggy and about 5 years old I did not know anything about Bichons as I rescued him but all I can say is what a perfect little dog his only downfall is he is food obsessed.I also have a tibetan terrier who is 11 years old and dibetic he is also white they are lovely together.

Wishing you all the best and good results on your chest exray.

love Linda x

[elsk]

Hi Philippa,

I was wondering the same thing about holiday accrual during sick leave and I hadn't got round to broaching that with my employer. I've just googled it and found on the Direct.gov site that you are entitled to accrue holiday during sick leave, and also if you are unable to take the holiday during the holiday year because you've been off sick, then you are entitled to carry it over to the following year.

You can point your employer to the evidence at http://www.direct.gov.uk/en/Employment/Employees/Timeoffandholidays/DG_10034711 - scroll down to the section on Sickness.

This is brilliant news!

Good luck on your return to work. My GP gave me the new fit note with 'Phased return' and 'Altered hours' ticked for one month and suggested no more than 10am to 3pm for 3 days a week to start with. I've been back at home today and really tired, but happy that I've made progress and started to get back into work.

E xxx

[Guest user]

Hi Ladies

Thanks for your well wishes. I did get the "all clear" yesterday and they will see me in breast care in one year! The surgeon does not want me to come off Tamoxifen though so suppose I will just have to go with the flow. Just waitng now for the results of the chest xray they did because of this cough I have had for months. She says my chest sounds clear and I should hear very soon.

Hi Linda is that a Bichon in your picture? we have one called Belle she is 10

We are all such worry asses arent we! Hope you are all going on ok.

love Wendy

[Guest user]

Hi Elsk

I feel a bit daft to be honest after all the fuss I made on Wednesday, I realise now that I would be far worse off if they just dropped me off their radar and said see you in 12 months. As much as I want to put this behind me I have realised that just isn't going to happen and I have to learn to live with the follow ups and the stress that involves. But at least if there was anything then i would stand a greater chance of survival this way.

I went in unofficially yesterday and everyone was lovely...very pleased to see me. I go back at the start of May we haven't worked out my hours yet and my boss wasn't sure what happens to your holidays if you have been off sick do you still accrue it or not do you have any idea?

But I shall do part time to start with probably just mornings for the first couple of weeks. I'm seeing my gp next Friday and hopefully he will give me a phased return to work note.
phillippa x

[elsk]

Hi Philippa,

I've just picked up on this thread. I remember from the 'rads during February' thread that I am just a few weeks ahead of you.

My follow ups will be every 4-6 months alternating between my onc and my surgeon. I saw my onc on the 12th April and already have an appointment to see the surgeon in July. My view is that this is my chance to ask any questions about things that might be bothering me at that stage. For example, I have read that some of the SEs of rads can occur a few months ater treatment, and my scars might have changed etc.

I think you've come to the right conclusion - that this appointment will reassure you and you won't have any uncertainty hanging over you and spoiling your wedding and honeymoon. The other thing that you may want to ask at that point is for a letter from your consultant to say that, x months after completion of treatment, you are fit and he sees no reason why you shouldn't travel. That would give you extra peace of mind if, God forbid, anything happened while you're away and you need to claim on your travel insurance. My consultant was happy to do this for me as I often have to travel on business. They usually write to your GP anyway so they just need to put those words in and send a copy to you.

Are you going back to work soon? I went back this week for 3 days on a phased return and am feeling much better - lots of hugs from my colleagues and then lost of work to get my brain back into gear!

Take care. E xx

[topsymo]

I agree with lindiloo that the frequency of follow-up appointments has more to do with local practice than anything else. (and maybe money?)
MY onc said there was no indication from research to suggest that frequent follow-ups led to 'better outcomes' and that if symptoms did present, patients themselves would be the first to know and could ask to be seen.
Cherub mentions that she was told she was low risk so only needed yearly apps. I was told that I was high risk ( Grade 3 , stage 3 with node involvement) but my 1st appointment after finishing treatment was 9 months later,-and then yearly, alternating between the onc and the surgeon and with mammos every 18months.

I actually felt quite differently from Mandeville - though I appreciate what she and others have said.

Like all of us, I was stunned by my 'out of the blue' diagnosis and hugely resentful of the way BC took over my life for 9 months- but perversely, after all the treatment and hospital visits, culminating in the daily appointments for rads at the end, I actually felt that I had been 'cast adrift' when the onc said he wouldn't see me again for 21 months. (the surgeon saw me 9 after this- although as it turned out it, wasn't even surgeon who had operated on me)
Perhaps I am unusual but I felt I would have liked to have seen someone more frequently, at least for the first year, if only for bit of 'support". Maybe that is why so many of us use these forums?

[cherub]

In my own case they told me that whilst I had a low to moderate chance of the cancer returning during remission, they were not actually expecting that to happen. I think this is probably one of the reasons why I am on a yearly review, and am sure the medics must weigh everything up before they decide what your follow ups need to be.

[Guest user]

Hi all,
Every hospital seems to be different doesnt it, ive just had my latest mammo a few weeks ago and was given my follow up arrangements letter before i left, i now have yearly appointments with onc and breast surgeon alternating ,so see someome every 6mths, that will continue for the first 5 yrs , i will also have a mammogram every 2 yrs untill year 10 after DX (years 1,3,5,7,9) after the 10 yrs i will be put back on to the NHS screening program, and have 3 yearly mammograms which will continue for life, even after the age of 70,
After the first 5 yrs i will have an open appointment at the breast clinic for any concerns or worries and can telephone direct for an appointment to be seen by my consultant within a few days without having to go through my GP.
All in all i feel quite reasurred that they are keeping a good eye on me , though i was a bit worried about 2 yearly mammos at first , but am ok with it now , was surprised that i would be going to the breast clinic for mammos for 10 years though ,but again its good to be kept a close eye on.

[Guest user]

Hi Girls

Just wanted to let you know that I am feeling better today, got my head round yesterday and all my worrying and am trying to look at as Monica has advised as reassurance and not as something worse than that. I will have the next appointment in August before my wedding so I don't have to have it hanging over me afterwards, and if I have to deal with anything then I will do. If I can cope with everything else then I will cope with this as well.

Had my first 'unofficial' day at work today which went better than I thought.

Take care and love to all

Phillippa x

[cherub]

I now only get a review appointment once a year, which is about 3 weeks after my yearly mammo. However, my oncologist told me that the breast service is there for patients all the way through to the end of remission. She said if I was to have any suspicions about anything to contact my breast care nurse who would get me an appointment, usually within a week. When I finish remission I will have turned 50 and the surgeon told me I would then pass into the screening programme.

[lolly73]

I didnt have chemo but i have a check up every 3 months alternating between surgeon and oncologist. I am 2years 3 months from dx and think i will continue every 3 months until the 5 years.

[Guest user]

Sending a big hug for you Wendy and hope that everything is fine today. hugs T.

Are these 3 month check up's only for those of you who have had chemo ?, I didn't need that, I finished rads yesterday and as far as I know won't be seen again by anyone until my 1st yearly mammogram towards the end of this year and a follow up app with the surgeon next January

[Guest user]

Hi Wendy hope its ok to but in but I would like to wish you calm thoughts and good results. love Linda x

[Guest user]

Hello everyone
just popped in, hope thats OK.
Wanted to say that it DOES get better over time - it becomes fairly routine as you go on and the fear kind of switches gear to mindfulness, rather than full blown anxiety of the waking at 4am variety. I can't promise blithe indifference (and we're all different) but just wanted to reassure that you tend not to have 5 years of near-constant anxiety. I think you kind of come to terms with it, and when you have had a couple of reassuring appts they start to feel different. Up til now they've all been dealing with the big lurgy, from now its more of a check up.
Well done on finishing it all - try and relax and enjoy the summer - which we all deserve after the winter we've had
much love
monica xxx

[Guest user]

Hi Phillipa and all

I know exactly where you are coming from got my 1st appointment for my annual mammogram with the surgeons registra today. Yesterday I had to come home from work as I was so emotional and worried sick. There should be no need to worry except I have had a cough for several months now and the Onc said to ask for a chest xray today. 1½ hrs to go now, not crying today but still scared stiff. I have a list of things to ask just hope that the appointment is long enough!

love Wendy

[Guest user]

According to my BC nurse I should see the surgeon a year after the first operation, they leave us with the oncologist up to then.

I know that seeing someone regularly should be reassuring but just the thought of having to go back to the hospital every 3 months has stressed me out so much, and I know it shouldn't and I know its for the best, I end up thinking that I will never be able to put all this behind me.

phillippa x

[Guest user]

I have just started rads today, following a WLE in Nov 09 & chemo. I was only saying to my mum today that I thought it was strange that I had only had one appointment with my surgeon since the op and that was the week after to discuss further treatment. Also on my long list of appointments in the future I don't have any with him, just lymphodema checks and with a nurse practitioner (don't know what that one is for). Obviously I have been seeing onc regularly.

Is this normal?

[Guest user]

Not sure wchich hospitals you attend, in Scotland I saw the onc after I finished my chemo in Aug 2007, then had my 1 yearly mammogram and saw the surgeon at the same time. I had a small problem in jan/feb 2008 with bleeding on the Tamoxifen and had a visit to the gynea outpatient everything was ok I saw the onc just after in March 2008 but havent seen her since, and I now only see surgeon at my yearly mammogram. I suppose if their was something wrong my GP would contact them and I would get a referral. Sometimes you feel very alone after treatment but suppose you have to learn to live again without constant hosp appts. A wee bit scarey tho.

Carolyn x

[Guest user]

I was always offered only an appointment every 6 months and given the choice as to whether I saw the Onc and Surgeon or just the Surgeon. I was treated privately. For the first year I did see both but this year I'm seeing the Surgeon twice. My Onc. said that they had come to realise that sometimes the medical profession think that they are being reassuring by having appt. every 3 months but actually appts. just cause the patient stress! Apart from the yearly mammogram I don't think that they can tell me anything I don't already know.

take care everyone

[cherub]

I should have been discharged from Oncology in June 2008, a few weeks after I finished Herceptin. However, at that point I had postmenopausal problems and my Oncologist had also referred me for counselling,which had been refused by my GP, so she said she was not willing to discharge me until she knew those issues were being dealt with and I was on a more even keel emotionally. Having an extra appointment tagged on at the end helped me immensely.

[Guest user]

like the rest of you, i have just finished chemo and rads. I will be seeing the oncologist every 3 months and the breast surgeon every 3 months. They asked me to make sure they do not clash so an appointment every 6 weeks then

[Guest user]

I had thought that I was doing really well, I felt well and my general attitude to everything was very positive, I couldn't believe how nervous I was this morning walking into the hospital. But I suppose that I will feel like that for the next five years!

phillppa x

[Guest user]

Apparently, at my hospital, they alternate every 4 months between the surgeon and the oncologist for two years (I think), plus the annual mammogram. Then it goes down to 6 months for two years and then annually. Although I know I shall get worked up, I find it rather reassuring as I would rather they were keeping an eye on things, rather than just relying on me!

Ann x

[Guest user]

Hi elinda

I did ask her about delaying the appointment and she said it didn't matter if I did, but wouldn't I rather get it over and done with so I could look forward to the wedding - that would be lovely if I could guarantee that I was going to get good news!

I am trying very hard to see this as a positive rather than the huge negative that it seems at the moment. And I'm sure that once I get my head round it I will be able to push it to the back of my mind, and yes I do try to see it that I don't have cancer anymore but oh god it is hard isn't it!

phillippa x

[elinda45]

Hi Phillipa

I've alternate appointments with the Oncologist and breast surgeon every 3 months. This gives the benefits of two opinions instead of one. I think that's good quality care. This may be what your oncologist was talking about.

To some extent I block it out. I feel relieved that I'm seeing someone every 3 months so they keep an eye on things. I try to think of it as an opportunity to ask questions rather than anything else. It is a reminder of the cancer although I don't think there's a day go by at the moment when I don't think about it anyway. But on the whole I live my life working on the assumption I don't have any cancer anymore as I'm such a worrier I'd go mad.

Did you discuss delaying your appointment with the BC nurse? If not, I'd call her back and ask her about that too.
Elinda x

[Guest user]

BC nurse has just called me and told me the same as all of you, that if oncologist was worried then he wouldn't leave me 3 months and that when she spoke to him to ask him was there anything I could be worried about he looked blank and said no.

So the only thing I have to think about now is do I stick with my 3 month app in August before I go on holiday/honeymoon or do I chicken out and leave it until I get back?

Phillippa x

[Guest user]

I suppose thats one way of looking at it, the oncologist said something similar that at least seeing me would catch something sooner rather than later, although mine wasn't found through having a lump it was microcalcification which can only be seen on a mammogram.

So pleased to hear that you are one step further along the road to completing your treatment, good luck with the radiotherapy the fear of the rads is far greater than actually having it. Once you get the first few over with its just the grind of having to go there every day that can get wearing.

Look after yourself.

px

[finty]

It's really hard not to worry - but actually I suspect in some ways seeing someone frequently is less worrying than big annual check-ups. And now you are finished I'm sure you will gradually stop thinking about it all the time - I had my last Tax a week ago, and I can see already that my attitude is subtly changing and I'm feeling more positive. Still have rads to go, and then years of Avastin and Tamoxifen - but I am starting to see how it can recede from being an ever present blight to something that I think about less often.

Good luck going back to work - I'm sure it will help, but don't over do it.

finty x

[Guest user]

Hi Finty

The oncologist did ask me if I have an app to see breast surgeon but I haven't heard anything from him either so that worried me as well!!

No mention was made of any scans or tests either so you are probably right that it is just them keeping an eye on me and I shouldn't be so freaked out.

I will try to relax I promise...and as much as I'm not looking forward to going back to work I know that it will be good for me to have something else to occupy my thoughts rather than cancer. I'm going in 'unofficially' tomorrow just to see everyone and my boss is taking me out to lunch so that will be good.

We bought our wedding rings the other day...still can't quite believe that I am getting married again.
px

[finty]

This sounds normal - just a chance for you to ask any questions. It doesn't seem like they are suggesting any tests or scans - so there won't be any news to give you. I still see my breast surgeon every 3 months - probably go to 6 months after the next one. I would hope to see my onc every 3 months after treatment is finished - I'm sure there will be some questions that will have come up in the mean time.

Well done on finishing you treatment - now relax and enjoy planning your wedding!

[Guest user]

Hi elinda

Thank you so much for replying so quickly - I am feeling so stressed and freaked out.
Last week I was feeling so good but the stress levels grew and grew from Sunday onwards as the appointment day got closer, how on earth do you deal with this every time you have to go for another appointment?
This bloody disease is just always there in the back ground waiting to pounce again isn't it!!
I have just left a message for BC nurse so hoping she will call back and put my mind to rest.
px

[elinda45]

Hi Phillipa

Yes I think this is normal. It's a double-edge sword because it is, as you say, a reminder of things although on the other hand if you have any worries or anxieties it means that a specialist can check you out rather than your GP.
I have my second 3 monthly appointment next week and I feel anxious but also have questions to ask him.

I do understand though about your wedding. Perhaps have a word with your BC nurse and see what she recommends. If it's a matter of 2 or 3 weeks I shouldn't think it would be a problem. I expect others on this site would be able to advise about this too.

take care
elinda x

[Guest user]

Hi Ladies

Feeling very freaked out this morning but I have had what I thought was going to be my final appointment with my oncologist this morning as I have finished all my treatments. He examined me said that everything looked fine and then said 'we'll see you in 3 months'!!!!

Is this normal? And before you ask 'why didn't I ask him' he was gone before I could get myself back together again.

I know that I will have to have annual mammograms but I was convinced that I would be able to put all this to the back of my mind for 12 months, now I can't. Plus the appointment is for August and I'm getting married in September so now don't know if I should put it off until after the wedding/honeymoon because if I was to be told something awful in August I would be freaked out just before the wedding!!

HELP

phillippa x